16 Things that have helped me as the parent of a child with special medical needs

Writing down any question about my child's health so I can remember them at his next appointment.

Seeking out groups of parents who have children going through the same issues for support and to ask for advice.

Being mentally prepared for the worst news. This not only helps me stay composed when we receive bad news, but it makes the unexpected good news even better.

Researching every treatment option, including future options and treatments that are being developed, in order to make an educated decision about the best treatment path to take for my child.

Knowing the risks and side effects involved with every treatment option so I understand how every option will effect my child’s quality of life. Practicing this and wanting to make sure I choose the best option for my child also stops me from making hasty decisions.

For example, my son was born with corneal clouding. When his first transplant failed we were given the option of giving him a k-pro (a prosthetic cornea) or just leaving his eye the way it was because he had some vision out of his other eye. At first we wanted our child to have the most vision possible and considered the k-pro but when we realized he would not be able to swim or do anything that might risk infection of the transplant, we chose leaving his eye alone. Jax having a normal childhood was the most important thing to us, even if it meant less vision for him.

Researching the medical jargon that is associated with my child’s medical issues to better understand the medical professionals at his appointments.

Learning about the technology that is available to help my child be independent now and in the future.

Trusting my instincts when it comes to my child’s health care. If I see something his doctors might have missed, or have an idea they didn’t consider, I speak up about it.

Getting a second opinion made me more confident in the information I had already received from my child’s doctors and, because both teams of doctors agreed on the best plan of treatment for my child, I was very comfortable with our choice of where to take him to be seen. Confidence and trust in my child’s doctors put my mind at ease during appointments and procedures.

Talking with my family and making sure we were all on the same page with what exactly we want for our child now and in the future was very important in making a decision for care that everyone supported.

Researching side effects of all medication and being prepared to deal with them.

Accepting my child as he is. Once I got passed the disappointment of finding out that not everything was perfect, I was able to enjoy my new baby like I was supposed to.

Celebrating every accomplishment and milestone my child hits, no matter how small it is brings excitement and hope. It encourages me to do what I can to help my child reach the next milestone.

Reading stories of others with similar issues succeeding in life decreases my worries for my child’s future.

Instead of dwelling on the bad things, I have turned my focus on the good things happening in my child’s life. I tell myself that it could always be much, much worse. When I am upset about the things that go wrong, I forget to soak up each moment of my child’s development. They grow up so fast and I don’t want to regret the time I wasted by being negative.

Being open about my child’s story by starting a Facebook page and blog has really helped me to accept our situation. It has brought me peace and has connected me to people who are going through the same thing. These people have helped me and I have helped them. I also feel comfort in knowing that I am teaching others about the amazing things about having a child who is different or has special medical needs. I love showing others that there is always something bright in the darkest days.

People have asked me how I have stayed positive through all of the adversity that I have faced in my life. I think the only way to answer this question is to share my thought process and how the experiences I had growing up shaped my way of thinking.

Most people would see growing up with a terminally ill parent as a negative thing to endure. Although it wasn't easy seeing my dad battle his disease, it is the reason I am who I am today and I would not change that for the world.

"It is what it is"

Whenever something unpleasant happens in my life, I try not to dwell on the bad event itself. I focus on the outcome or the solution to the problem I am faced with. Sometimes the solution is just finding a way to cope with what has happened. The gist of what I tell myself is this:

“It is what it is, it’s done, it has happened. If you can change the situation, find a way to do so. If it’s something you cannot change, take the time you need to mourn, then find a way to make it easier to accept.”

In short, I always tell myself to deal with it. Maybe this sounds insensitive but I am a practical person. I don't like to waste my time doing things I don't want to do, like being unhappy, especially when I know my time is limited.

Having a dad who was terminally ill gave me a tool that most young people don’t have. That tool is the awareness that there is always a chance for unexpected disappointment in life. Because I know that disappointment is inevitable, I am mentally prepared to overcome things that many people have a hard time bouncing back from. I don't like to let things that I cannot change bring me down.

Uncertainty

My dad passed away from a genetic disease (VHL) on June 9th, 2012. His disease caused tumors to grow in his brain, on his spinal cord, in his eyes and in his kidneys. VHL has no cure and it is a “treat it as it comes” sort of thing. He was diagnosed before I was born, so him being sick was all I ever knew.

A lot of uncertainty comes with VHL. We never knew when a tumor would grow large enough to require treatment, we never knew what side effects from medication or surgery he would experience, and we never knew how much time we had left with my dad.

I don’t like uncertainty but I quickly realized that it was a major part of my life because of my dad’s illness. It was a part of my life that I could not change. I realized that I had a choice to make. I could either spend my life fretting over what I would have to watch my dad go through next, or I could accept that the uncertainty was always going to be there and I could live my life using my awareness of that uncertainty to my advantage.

Uncertainty isn't all that bad

Because we were uncertain of how long my dad would be around, we went on vacation every single year. Instead of worrying about the money, my parents made it a point to live life and they helped me create amazing memories with my dad that I could cherish forever.

Because I was uncertain of how much time I had left with my dad, I was given the opportunity to remind myself to appreciate the moments I spent with him. It would have been a lot easier to take the little things for granted had I not known my time with him was limited. That is something that the majority of people regret when they lose a loved one unexpectedly, the moments they took for granted.

My dad loved music and one of his favorite hobbies was singing in weddings. It has always been my dream to hear my dad sing in my own wedding. Because he was uncertain of how long he would be around, he recorded a song to play in my wedding, just in case he couldn’t be there to sing it.

Tyler and I are getting married in the Church this May. If we hadn’t known that there was a chance my dad wouldn’t live long enough to see my wedding day, he wouldn’t have had a back up plan so my dream of hearing him sing at my wedding could come true.

It's okay to mourn, but don't let it consume you

For this reason, it’s hard for me to be upset about what has happened in my life. Of course I miss my dad, I miss him every single day, but if he had been healthy, I would not be the strong, positive thinking person that I am today. I would not understand how precious our time with our loved ones really is.

Losing a loved one is never easy. It’s like a hole you can never fill and I think it’s very important to mourn that loss and expel those feelings. It’s a difficult thing for me to know that the only time I get to see my dad is on those rare nights he visits me in my dreams. I think it always will be difficult for me. But I know that my dad wouldn’t want me to waste my life missing him and I know he would only want to see me happy, that is how I cope.

My dad would want me to cherish every moment that I have with my loved ones that are still with me, especially my son. He wouldn't want me to waste my time crying or dwelling on the fact that he is gone. I was fortunate to have him as an example of using the uncertainty of life for good, instead of being afraid or letting worries hinder your experience here on Earth.

Cherish every moment

I have learned so much from having a terminally ill father. I have learned that if I let the hardships and disappointments in life bring me down, I will miss out on all of the good things going on around me. I have learned to cherish every moment because I am aware of the uncertainty of life.

Time is a precious thing and I have been blessed with a rare understanding of how precious it is and that is why my attitude has not faltered. I would never change my past because it prepared me to be a mommy in ways that I never could have imagined. It has helped me realize that mourning Jax’s disability and feeling sorry for myself about something I cannot change was only keeping me from enjoying every minute with him.

Most people don’t understand how important the little things are until it’s too late, and only then do they wish they could go back to cherish every moment. My hope in writing this is to help others realize the importance of spending your time being happy and not wasting time worrying about the things that you cannot change.

So, I leave you all with this important thing to be mindful of: Time is a precious thing and every moment full of worry or heartache is a moment wasted, one you cannot get back. Remember, disappointments in life are inevitable and you can either dwell on the disappointment itself or you can find the blessing hidden within that disappointment. Only you can decide how you see the circumstances you find yourself in.